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The real Susan

While I wanted to be respectful of my mom's privacy and use illustrations,
I don't think she'd mind me sharing this ONE picture with "her girls"
. . . and her biggest fans.

(L to R) Megan Scott, Dr. John Sanitato, Dr. Rashmi Jain, Rachel Lovati, Mom, Dr. Era Hanspal, Dr. Naveed Khokhar, Christine Nelson, and Dr. Michal Gostkowski

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Things you shouldn't say to a loved one with Lewy Body Dementia

Communication with someone who has Lewy Body Dementia should be patient, respectful, and compassionate. By avoiding these phrases, you can create a more supportive and understanding environment for them instead of potentially triggering confusion, anger, frustration, or distress.

"Do you remember...?"

It should go without saying, but you shouldn’t ask someone with cognition issues if they “remember" anything - including you.It's a hard habit to break, but for your LO's sake you really should try. Not only does this phrase make them feel pressure to remember, but it also leaves them feeling embarrassed, sad, or frustrated when they can't.Instead, begin the sentence "I remember when..." or "I remember you telling me about...." so you can reminisce without putting them on the spot. You should also introduce yourself when you enter their space during the later stages. If my mom greets me with a "Hi, darling (or sweetie)" and her sweet smile, then I know she remembers me.

"No, you're wrong."

Try not to argue with them. It's not a fair fight for someone with cognitive issues. Besides, there's no benefit to pointing out they're wrong, and it will only escalate their frustration and agitation.

"There's nothing there."

Hallucinations are a big part of Lewy Body Dementia. They are VERY real to your LO, so it's best not to contradict or question what the person is seeing. It will only agitate them further, and your goal is to deescalate the situation.Instead, acknowledge what they see. And, if the hallucinations seem to be scaring your LO, try to empathize with their feelings and provide reassurance that they're safe. Taking them to another room often helps, too.

"What do you want to do today?"

Open-ended questions can be quite challenging for someone with LBD. They might cause confusion and frustration, resulting in no response at all.Instead of asking open-ended questions, consider being more direct by suggesting activities like "Let's go for a walk," or limit choices to no more than two, such as "Do you want Butter Pecan or Chocolate ice cream for dessert?" instead of asking what they want for dessert.

"Calm down."

Your LO with Lewy Body Dementia is coping with anxiety, frightening hallucinations, and behavioral changes every day, all of which are beyond their control. Telling them to "calm down" is the least helpful thing you could say as it can come across as belittling, dismissive, and devoid of compassion.Instead, try to identify why they're upset (scared, frustrated, etc.,), acknowledge and validate their feelings, and offer them your support. You're on their team, remember? Let them know you are by making them feel heard and understood.

"I just told you that."

As frustrating as this may be, try to remain calm and answer the question like it's the first time they've asked. You don't ever want to make your LO feel shamed or embarrassed for having a disease.

"Why are you being so difficult?"

It's important to always remember that they're not being difficult on purpose - and it's never personal - so keep calm and don't get frustrated. Otherwise, you run the risk of escalating the situation and making it worse.Try to identify what’s triggering their mood and address their needs. Are they in discomfort? Scared? Do they need some food? Was it something you said or did? Clearly something is wrong, and I trust you'll do your best to figure it out.

"They passed away years ago."

Whether it's a parent, spouse, loved one, or a favorite pet, it's best to avoid mentioning that they have passed away.It's natural to feel conflicted about not telling the truth, but consider it a compassionate act instead. Bringing up a loss could only bring more pain to your LO with Lewy Body Dementia, something you'd never want to do.So, the next time your LO asks about someone who has passed away, go along with it and say they're out and will return soon. Even better, use it as an opportunity to reminisce, which will likely bring comfort to your LO since this person (or pet) is clearly on their mind.

You may slip up from time to time....
and that's okay.

♡S.S

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4 critical things to do after a loved one's Lewy Body diagnosis.

Your head is probably spinning after your loved one was diagnosed with Lewy Body Dementia. I get it, mine was, too. So I decided to jot down some critical things that need to get done at this stage to make caregiving for your loved one easier.

1. Get their POA & Advance Directives

End-of-life documents can be a sensitive topic for people, so your LO may not have them. However, it is essential get these documents completed promptly, especially while your LO is still able to make these decisions and sign the necessary paperwork. Don't delay in ensuring their wishes are known and honored.Although it varies by state, you'll need some (or all) of these documents:

If your family doesn't have a lawyer, you can sign up for LegalZoom or Legal Shield for a small monthly fee of around $30/month.Once you have these documents, you'll need to provide copies to your LO's doctors, pharmacy, bank, financial institutions, etc., to speak on their behalf.

2. Set up their EHR account

Electronic Health Record (EHR) systems like MyChart make it so easy to handle your LO's medical affairs. From making appointments, accessing test results, renewing prescriptions, and messaging their doctor with urgent questions, it's an efficient way to manage their health.Make sure you write down their username & password and keep it in a safe place.

3. Line up their doctors

Having a good healthcare support team is priceless when dealing with a condition such as Lewy Body Dementia. How you manage Lewy Body Dementia as the disease progresses makes all the difference. Make sure to do your research, get referrals, and read online reviews before selecting their doctors.Your LO will need some or all of the following specialists to manage LBD:

Also be sure your LO's current Primary Care physician is familiar with Lewy Body Dementia, extremely responsive, and easy to work with. Shout out to Dr. Jain and her team at the Cleveland Clinic who've been amazing for all of Mom's little emergencies that pop up!

4. Set up their online accounts

You've probably already noticed by now that your LO needs help managing their lives. It's best to sit down with them and create online accounts since you -- or someone else -- will be making sure their life run smoothly.

Create a master list of usernames, passwords, security questions, account #'s, and any other info needed for these accounts, and put the list in a safe place.

*A family gmail account is optional, but it's a great way to keep multiple family members informed on important emails & pitch in when needed on any tasks. You can also set pill & appointment reminders remotely to your LO's phone. Another benefit of creating a new gmail account is that it also avoids the awkwardness of asking your loved one for access to their email, and making them feel like they have no control.

It's a lot, but you'll get it done in due time.

♡S.S

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Simple ways to organize pills and stay on schedule

Lewy Body Dementia patients often struggle with organizing & remembering to take their pills as their cognitive function declines. However, there are some strategies that to help caregivers manage this task for their loved ones.

Organize their pills

Every caregiving situation is unique, and it's important to choose a pill management system that is customized for you and your LO's needs and capabilities.

Here are some questions to help you narrow down what you & your LO will need at their current stage of LBD:

Once you have your answers, here are some good pill organizing options to consider:

PILL BOXES

AUTOMATIC PILL DISPENSER

PILL DELIVERY SERVICES*

*Two caveats to consider for PilPack & divvyDOSE is that controlled substances (like Clonazepam, for example) require a signature on delivery in some states and come in a separate bottles, not the pack.

Set Pill Reminders

Even if your pill organizer comes with an alarm, it's a good idea to have backup reminder for you in case something goes wrong. Several Lewy Body Dementia medications need to be taken at the same time every day to manage symptoms, so it's important to remain on schedule.

Make a pill chart schedule

It's super handy to have an updated pill chart schedule close to their meds for you, a home healthcare aide, or anyone filling in for you. You can even take this chart with you to doctor's appointments, like we used to do.You can download this FREE PILL CHART SCHEDULE from Still Susan and add your LO's details.

Online pharmacy & apps

Get your LO signed up for an online pharmacy account and download their app. All major pharmacies have apps, and they'll be your BFF to save time on refills.

Have a backup plan

You've got a lot on your mind, and we're all prone to forget things, so keep an extra pill box filled with their daily pills in your glove compartment, purse, or backpack.You can also divide their pills by time slot into labeled ziplock bags or unused prescription bottles.Just don't forgot to refill the backup pills if you use a dosage...like I've done a few times. :)

Hope this helps!

♡S.S

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How to keep their home safe in early stage Lewy Body Dementia

Ensuring the safety of their home in the initial phases of Lewy Body Dementia (LBD) is essential to support your loved one in staying independent, preventing falls, and minimizing any confusion or anxiety.I highly encourage you to hire an Occupational Therapist (OT) if you can to visit your home to assess safety and make personalized recommendations for your loved one. If they are on Medicare, this service may be covered if prescribed by their doctor.Meantime, below are some useful tips for keeping your loved safe at home. Take a deep breath and dive in....and remember, you don't have to do everything all at once.

Kitchen

Bedroom

Living Room

Bathroom

Other home safety measures to consider

Hope these help
keep them safe!

♡S.S

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Kitchen labels for Lewy Body Dementia

A great tip for making life a little easier at home for someone with Lewy Body Dementia is to keep things simple and easy to find. Using clear and accurate labels can help reduce confusion and frustration, allowing them to maintain their independence.When my mom was diagnosed with Lewy Body Dementia, my parents made the big move from New York to Ohio so she could get care at the Cleveland Clinic. I was on the hunt for kitchen labels that would help her settle into her new space, but when I couldn’t find any that suited her style, I decided to create my own.Feel free to download these kitchen labels and use them with your loved one!

Download includes:

• Download here

Hope your loved one finds these useful!

♡S.S

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Easy dinner recipes to drop off and freeze for loved ones with LBD.

Cooking can be quite challenging with Lewy Body Dementia, even if you've cooked like Julia Child for the past 45 years like my mom. One simple way to help out your loved one - and make sure they're eating well - is to fill up their freezer with homemade meals so they don't have to cook.Below are a few fairly healthy and tasty recipes to stash in your LO's freezer. I used to make four of these recipes every two weeks for my parents before becoming Mom's full-time caregiver, which was plenty of food for two people.QUICK TIP:
Divide the meals into microwave-safe Tupperware containers (or ziplock bags) with 1-2 servings in each. This way, your LO (or parents, in my case) can enjoy a variety of meals throughout the week. Also, be sure to write the name of the recipe, reheating instructions, and the date you made it on all of the servings.

Soups

Chicken & Turkey

Beef

Vegetarian

Bon Apetite!

♡S.S

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Lewy Body Dementia caregiver tips for doctor's appointments

Assuming a more active caregiving role usually means getting more involved in your loved one's medical appointments. As a Lewy Body Dementia (LBD) caregiver, there are some important steps to prepare for a doctor's visit to ensure that the appointment goes smoothly and effectively.Here's a list of suggestions you might want to do before, during, and after their appointment.

Before their appointment

1. Call doctor's office in advance to say you'll be joining your loved one. Find out if your LO needs to sign a consent form or a HIPAA (Health Insurance Portability and Accountability Act) waiver so the doctor can speak with you. If you've also been designated your LO's health care proxy or their Medical/Health Care Power of Attorney, bring the legal documentation with you to the appointment.2. Gather their medical history & medications. Important medical documents, like your LO's medical background, test results, list of medications (including pill allergies), and supplements they're taking will give the doctor a full view of your LO's health and treatment history.3. Write down any changes or new developments in your LO's behavior, memory, or symptoms. For example, is your LO having sleeping problems, seeing more hallucinations, or problems with balance or recent falls? Write down all your observations to discuss them with their doctor. Try to be as specific as possible if you can, and include time of day and any possible triggers or patterns.4. Make a plan for the appointment with your loved one. Prepare a list of questions or concerns you and your LO want to discuss with the doctor about ongoing or recent symptoms, treatment choices, medications, or their care plan. You only have a limited amount of time, so prioritize your questions from most to least important in the event you run out of time. You can always email the doctor later with follow-up questions or any other concerns.5. Ask your loved one if they'd like some one-on-one time with the doctor to speak privately. Remember, it's their appointment, so offer to step out of the room to allow them to have a private conversation with the doctor. Remind them that you're their ally and biggest advocate, and only there to support them. They might decline your offer, but it's a subtle way to show them that they are the ones in control.6. Pack a "go-bag." It’s always a good idea to bring along some essentials to help your loved one feel comfortable while waiting for their appointment! A few bottles of water, some snacks, their medications, and fun activities can really help pass the time and ease any stress. I like to create a playlist of Mom’s favorite songs on my iPad or watch adorable corgi videos that never fail to make her laugh. And if they have any issues with bladder control, don’t forget to pack an extra pair of incontinence briefs just in case.

During the appointment

7. Let your loved one speak: Doctor's appointments can be overwhelming for people with LBD. It's normal to want to help if they're struggling with finding words or remembering details, but doing all the talking might make them feel ignored or belittled. Let them speak for themselves and make sure it's okay with your LO if you chime in occasionally to fill in missing information.8. Record the appointment or take notes. There’s so much information shared during these visits, and it’s easy to miss important details. If your loved one is having trouble with memory and cognition, why not ask the doctor if you can record the appointment? If recording isn’t an option, make sure to write down key information such as treatment plans, medication instructions, test results, and possible treatments. You might find the Wave AI note-taking app super helpful — it creates detailed summary notes, allowing you to remain focused on supporting your loved one.9. Ask for clarification If you don't understand something the doctor says. Don't hesitate to ask for clarification. It's important that you and your LO have a clear understanding of the diagnosis, treatment plan, medication instructions, and care instruction.

After the appointment

10. Treat yourselves to something enjoyable. Appointments can be a bit overwhelming for both of you, so why not plan something fun together afterwards if they’re feeling up for it? Keeping it low-key with a meal or a mani/pedi is always a great option. If they’re a bit worn out and prefer a nap, you could set up something special for later, like going for ice cream or a fun outing with family or friends. Regardless of the choice, you’ve both had a challenging day, and it’s time for a little joy!11. Follow up. Make sure to schedule any recommended tests or specialist appointments for your LO, and mark them on their calendar. Ensure they get their medications and know how to take them. Finally, write down any special instructions for your LO from their doctor and put in a noticeable place.

Hope these tips help!

♡S.S

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Ways to use Alexa for Lewy Body Dementia caregiving

As a caregiver for someone with Lewy Body Dementia, having an Alexa can be a game-changer in many ways. Here are some ideas on how to use your Alexa to make life easier and more enjoyable for both you and your loved one:

Play music

Alexa can play your favorite songs all day long or some soothing music like "Healing Sounds" to set a peaceful and pleasant vibe for your LO. Music is extremely beneficial when they're feeling agitated, confused, or down, and you can easily manage music from the app, which is pretty convenient if you live remotely.I suggest creating music playlists for various times of the day to match your LO's mood and to save you time. If you're not keen on shelling out for an Amazon Music subscription, you can link your existing music streaming service to your Echo by heading to "Music & More" in the app.Feel free to also use Still Susan's Spotify playlists I created for my mom if you don't have the mental energy or time to be DJ.

Set personalized reminders

Use Alexa to remind your LO of important tasks with an announcement, like taking medications throughout the day and upcoming doctor's appointments. This can help your loved one stay organized and ensure that nothing falls through the cracks. Alexa can also send reminders to a caregiver's phone if needed.

Drop-In Calling

Set up voice and video calls (with Echo Show only) with Alexa to help your LO stay connected with family and friends. This can be especially important for those having difficulties using the phone or communicating with others. You can also schedule your drop-in calls around medication and mealtimes to help your LO with these tasks remotely.Remember to be gentle when you drop into voice calls with your LO so you don't scare them or cause a fall. It's a great idea to listen for a moment to see if you can hear them and where they might be. Then, try softly saying "Hello" a few times to catch their attention.

Alexa Emergency Assist

If your LO ever falls or needs emergency help (knock on wood), they can simply say, "Alexa, call for help." In no time, they'll be connected to a trained Urgent Response agent. The agent will organize emergency services, provide crucial health information from your profile to the first responders, and notify your emergency contacts about the situation.For good measure, post a sign near your Echo devices on bright colored paper to remind your LO what to say to Alexa in an emergency.Alexa Emergency Assist costs $7.99 per month, but it seems like a small price to pay for peace of mind.

Control smart home devices

If you've got smart home gadgets and smart plugs, Alexa can help you manage your LO's lights, TV, front door lock, and thermostat without lifting a finger (even remotely, which is handy). This makes it super easy to keep your LO safe and cozy. Plus, you can schedule your lights to come on at specific times using Routines in the Alexa app, which is helpful during sundowners.

Create your shopping list

Keeping track of your grocery list can be a challenge for anyone, especially for busy caregivers! Thankfully, Alexa is here to help. You can easily add items to your shopping list just by using your voice whenever you remember something. Plus, you can choose to add a widget on your iPhone or Android home screen that displays your entire shopping list, making it super convenient while you’re at the store.To get started with the widget, just make sure you have the latest version of the Alexa app installed on your phone.Another fantastic feature is the ability to share your shopping list with friends or family. That way, if someone offers to pick up groceries for you while you're swamped, they can easily see what you need.

Listen to books and podcasts

Alexa can read books from a Kindle and Audible to keep your LO entertained. If it's going too fast, just say, "Alexa, read slower," to slow it down to 75%.You can also enable your favorite podcast service to listen to whatever niche or topics your LO enjoys. We're big fans of Freakonomics Radio, Stuff You Should Know, This American Life, and ArtCurious in our house. And much to my surprise, Who Shat On The Floor At My Wedding? was a big hit with my mom.Try to limit books and podcasts to 10-15 minutes.

Play games

Alexa offers a variety of games that can help stimulate cognitive function and provide entertainment for both of you. Try playing Jeopardy!, Twenty Questions, Song Quiz, or other interactive games through Fun with Alexa.

Hope this makes your life a little easier!

♡S.S

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Best TV shows and movies for people with Lewy Body Dementia

Struggling with what to watch? We've got you covered. Check out our list sorted by streaming services. And since you're busy caregiving, direct links are included to save you some time.Also, if you're caregiving remotely, check out Jubilee TV which recently launched. It's a tad pricey, but it does allow you to change the channel remotely for your LO, which is huge!

Amazon Prime:

Apple TV+

Basic Cable:

Disney+:

Max:

Netflix:

Paramount+

PlutoTV

YouTube

Enjoy!

♡S.S

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Tips to manage sundowning for Lewy Body Dementia

What is sundowning?

Sundowning is when you see changes in your loved one's behavior, typically in the late afternoon or early evening. During this period, the person might feel really anxious, agitated, confused, and have hallucinations or delusions. This could last throughout the night, making it tough for them (and you) to get a good night's sleep.

Potential causes of sundowning

While the exact cause of sundowning is unknown, different variables may contribute to its development, including brain alterations, altered circadian rhythms, exhaustion, and sensory overstimulation.Whatever the cause may be, when the sunlight outside fades and the shadows increase inside, it's very disruptive to your LO's internal body clock, and you may begin to notice a change in demeanor. We call it the "witching hour" in our house, and it's usually when our dear mom struggles the most.

What can make sundowning worse?

Tips for managing sundowning

"This too shall pass,"
as Susan would say.

♡S.S

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Make your own daily pill schedule PDF templates for Lewy Body Dementia

When your loved one is dealing with Lewy Body Dementia, having a daily pill schedule chart to manage medications and supplements is crucial for symptom management and overall quality of life.A simple daily pill schedule chart can help keep track of different medications, doses, and timing to avoid any confusion or missed doses. It allows your LO and their caregiver to see at a glance what needs to be taken when, ensuring consistency and effectiveness of treatment.Feel free to download one of these simple, large print, editable templates I made for my mom. As you'll find, you'll be making updated pill schedules often, so this format makes it easy for you.And don't forget to print extra copies to bring along to doctor's appointments!

Download includes:

• Download here

Hope this makes medications easier!

♡S.S

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Fidgeting strategies & activities for Lewy Body Dementia

Fidgeting is a common symptom of Lewy Body Dementia, and it can be quite challenging to manage. Here are some fidget prevention strategies and activities that might help your loved one.

Fidget prevention strategies

When you LO fidgets, it is often a signal of restlessness, boredom, lack of purpose, or anxiety. Addressing these underlying issues can help reduce fidgeting, and these strategoes can help:

Fidgeting activities

It's a good idea to have some activities on hand for your LO when they fidget. Please keep in mind that everyone is unique, and you know your LO best, so tailor activities to their skills and interests.Here a few fidgeting activities for my mom at various stages to give you some examples:

It's important to remember to be flexible. What works one day may not work the next, so learn to adapt and try something else.

Hope this helps!

♡S.S

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How to clean urine
out of couch, carpet, bedding, and mattress

Urinary incontinence is quite common with Lewy Body Dementia. Especially as the disease progresses. This post offers tips to prepare you for potential accidents so you can handle them with ease.I know caregiving is exhausting and cleaning up urine is not fun, but it's important to stay calm when accidents occur. The last thing you'd want is to cause further distress to your loved one or deepen their feelings of shame or embarrassment over something beyond their control.Treat it as no big deal, and just clean it up with these tips below.

Couch (or any upholstered furniture)

What you'll need:

- 3 microfiber cloths
- 1 regular cloth
- 1 tablespoon dishwashing liquid
- 2 cups of cold water
- 1 tablespoon white vinegar
- 1 small bowl

Instructions:Gently dab fresh urine stain with a clean, dry microfiber cloth to absorb excess liquid. Avoid rubbing, which can spread the stain.Next, in a small bowl, mix one tablespoon of dishwashing liquid and two cups of cold water. Add one tablespoon of vinegar to disinfect and neutralize odors. Stir gently so it doesn't get sudsy.Dip a new microfiber cloth in the solution and carefully blot the stain from the edges inward. Repeat as needed.Then rinse with a damp cloth to remove detergent residue.Finally, gently pat dry with another clean, dry microfiber cloth until no moisture remains.

To Prevent Future Urine Stains:Place a Washable 34" x 36" Incontinence Bed Pad on your sofas and chairs underneath your loved one. If the pad gets wet, simply toss it in the washing machine.

Carpet

What you'll need:

- 1/3 cup of distilled white vinegar
- 1/4 cup baking soda
- 1/4 cup mild dish soap
- 1 cup water
- Spray bottle
- Paper towels or 3 clean washcloths
Instructions:Soak up as much urine as possible using paper towels or a clean clothRinse the stain once with cold water.Blot with paper towels or clean cloth to remove excess waterCombine 1/3 cup of distilled white vinegar, 1/4 cup baking soda, 1/4 cup mild dish soap, and 1 cup water into a spray bottle and shake well.Spray soiled area with your solution, dab it with some clean paper towels or a washcloth, and allow it to sit for at least fifteen minutes.Blot the area with a clean washcloth to remove the liquid, and let it dry.If the urine smell isn't gone, repeat the two steps above.Once the odor is gone, vacuum up any residue.

Bedding

What you'll need:

-1 cup of distilled white vinegar
Instructions:Place your bedding in the washing machine, turn the water temp to cold, and add one cup of distilled white vinegar. Run a full wash-cycle - without detergent - to allow the vinegar solution to fully penetrate the fibers.Once the full wash cycle is complete, add your laundry detergent, and run again with warm water.BTW, this method also works for clothing.

To Prevent Future Urine Stains:We recommend using a 18" x 24" Washable Bed Pad underneath your LO at night along with a good pair of incontinence underwear. Position the pad between their lower back and upper thighs to contain urine to that area.You should also invest in a good mattress protector to go under the fitted sheet to prevent urine from soaking their mattress. As you'll see below, mattress stains are the hardest to clean, so a washable mattress protector is a must-have.

Mattress

What you'll need:

- Distilled white vinegar
- Water
- 1/4 cup baking soda
- Spray bottle
- 2-3 small towels (washcloth or hand towels)
- Vacuum hose (or hand-held Dustbuster)
Instructions:Step 1: Start by removing all your bedding and tossing it in the wash.Step 2: Grab a spray bottle and fill it halfway with white vinegar, then top it off with water.Step 3: Use a dry towel to blot the urine on the mattress. Avoid scrubbing to prevent pushing the urine deeper into the foam, which could make it trickier to remove the odor.Step 4: Once you've blotted most of the moisture, generously spray the white vinegar mixture over the area. Keep blotting to remove any excess liquid.Step 5: Sprinkle baking soda over the area and leave it for 8-10 hours, or longer if possible.Step 6: Vacuum up the baking soda and check the spot. If there's still a stain or odor, repeat the process until your mattress is fresh and clean again.

To Prevent Future Urine Stains:Again, buy a mattress protector and some washable bed pads to spare yourself any future hassle.

Fingers crossed you won't
need these tips again!

♡S.S

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Laundry stain remover guide for Lewy Body Dementia caregivers

As caregivers, one common issue you might come across is dealing with laundry stains caused by spills or accidents. That's why we've put together this handy laundry stain remover guide to help you tackle those pesky stains like a pro. From removing grease and sauce stains to dealing with urine or poop, we've got you covered with this printable, time-saving guide.

• Download here

Slay those stains, caregivers!

♡S.S

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Pressure sore prevention for Lewy Body Dementia

People with Lewy Body Dementia can be more likely to develop pressure sores in the later stages. This often happens due to challenges like reduced circulation, decreased mobility, and difficulty moving independently, which can lead to prolonged pressure on certain areas like elbows, heels, and hips. Additionally, skin deterioration from urinary incontinence can create uncomfortable pressure ulcers on the buttocks.Because it can be hard for your loved one to express their discomfort or pinpoint where they’re feeling pain, it’s really important for caregivers to monitor their skin closely. The last thing anyone wants is for a pressure sore to get severely infected, which could lead to a lot of discomfort and agitation for your loved one. Not to mention, treating those sores can be quite a handful for you, so it’s definitely best to take steps to prevent them.

Pressure sore prevention strategies

Supplies to help prevent pressure sores

Keep these supplies on hand to help manage any emerging pressure sores:

What to do when you see a potential pressure sore?

Heel, Elbow, and Hips:

If you see a slight red spot, gently wash the area with mild soap and pat it dry. Apply a dime-size amount of petroleum jelly (or Manuka honey) with a clean finger, rubber glove, or popsicle stick, and then cover the wound with a non-stick pad with adhesive tabs and paper tape.Repeat this process daily for a week or so until the red spot disappears. If it starts to get worse or becomes dark red, call your doctor and ask for a wound care specialist referral.

Buttocks:

In addition to relieving pressure on the affected area, keeping the emerging pressure sore clean and applying a barrier mixture is essential.Start by gently cleaning the red spot with some mild soap and water, then pat it dry. Create a 50-50 mixture of petroleum jelly and zinc oxide cream (like Desitin). Apply this mixture to the buttocks using a popsicle stick, rubber glove, or clean finger every time you clean and change their incontinence briefs to protect their skin.It should take about a week for the red spot to disappear. But again, if the pressure sore gets worse or becomes dark red, call your doctor to get a wound care specialist referral.

"An ounce of prevention is worth a pound of cure." - Benjamin Franklin

♡S.S

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How to handle common Lewy Body Dementia behavioral problems

Handling common Lewy Body Dementia behavioral issues can be challenging, but with patience and understanding, caregivers can help their loved ones manage their symptoms effectively.It should be noted that if your loved one is exhibiting extreme or abnormal behavioral changes for a few days, it may be a Urinary Tract Infection (UTI), and you should contact their doctor.

Hallucinations and delusions

Lewy Body hallucinations can often lead to experiencing sights or sounds that aren’t really there, while delusions involve a strong belief in something that isn’t true, despite evidence to the contrary. Both of these symptoms are frequently seen in individuals with LBD.As a caregiver, it’s important to create a calm and reassuring environment during these moments. It’s best to avoid arguing or trying to correct them about their experiences, as this might increase their agitation. Instead, acknowledge their feelings and perceptions, whether they are amusing, strange, or frightening, and respond in a way that validates their emotions. This approach can help ease the situation and provide comfort.Consult with a healthcare professional about possible medication adjustments to help manage these symptoms.

Fluctuating awareness and attention.

Caregivers can help their LO by maintaining consistent routines and schedules to reduce confusion and disorientation. It is also important to provide a safe environment with minimal distractions to help with their attention span. Encouraging regular exercise and engaging in stimulating activities can also help improve cognitive function and overall well-being.

Agitation and aggression

Agitation and aggression are also common behavioral issues in individuals with Lewy Body Dementia. Caregivers should try to identify triggers that may be causing these behaviors and work to address them. Pain, discomfort, hunger, frustration, boredom, a noisy or overstimulating environment, or even something you did (unintentionally, of course) are common triggers.Redirecting their attention to a calming activity or using relaxation techniques such as deep breathing exercises can help reduce agitation. When dealing with aggression, it is extremely important for caregivers to stay calm and patient, and seek help from healthcare professionals if necessary.

Sleep disturbances

Sleep disturbances are a common issue in individuals with Lewy Body Dementia. Caregivers can help by establishing a consistent bedtime routine and creating a soothing sleep environment. My mom, for example, sleeps on an alternating air pressure mattress to keep her comfortable, listens to "Healing Sounds" or "Babbling Brook" on Alexa, and gets a 5 minute mini-massage before bed every night from my dad. This routine has been working for awhile (fingers crossed!), and she's able to sleep through the night. You know your LO better than anyone else, so figure out a soothing environment and routine that works best for them.Limiting caffeine and alcohol intake, as well as engaging in regular physical activity during the day, can also help improve sleep quality. If sleep disturbances persist, it is important to consult with a healthcare professional to explore potential medication options.

Handling common behavioral issues in individuals with Lewy Body Dementia requires patience, understanding, and a proactive approach to provide the best possible care for your LO. It's takes a lot of work - and it's exhausting - but keeping your LO feeling safe and comfortable is well worth it.

Hope these help your loved one!

♡S.S

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Types of finger food to eat for late stage Lewy Body Dementia

It’s important to let your loved one maintain control and independence, and eating is no exception. Below is a list of good finger food options to help set them up for success.A few tips for success:

Fruits & Vegetables

Breakfast

Lunch & Dinner

Dessert

Hope this helps!

♡S.S

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Tips to manage incontinence for Lewy Body Dementia

Lewy Body Dementia can cause a variety of symptoms, including incontinence. Incontinence refers to the inability to control one's bladder or bowels, leading to leaks or accidents. Dealing with incontinence can be challenging, but there are some tips and strategies that can help your loved one with Lewy Body Dementia manage this symptom and help them maintain their quality of life.

In the event of an accident, remain calm.

How you treat your LO in these moments really matters. Although they might not recall your exact words, they'll remember how you made them feel.Particularly in the beginning, your LO with LBD could feel humiliated about their incontinence problems. To ease their anxiety and preserve your relationship and trust, it's critical to provide comfort, empathy, and an upbeat attitude.Tell them "everyone does it," or share a personal story of when you peed yourself. In either case, remain calm, tidy up the accident, and move on.

Regular bathroom breaks

It's important to establish a routine for bathroom breaks. Setting regular times throughout the day for bathroom visits can help to minimize accidents and improve bladder control. It may also be helpful to remind the individual to use the bathroom regularly, as memory and cognitive issues associated with Lewy Body Dementia can make it easy to forget.Also, add signage to the front of your bathroom doors. A picture of a toilet and the word "bathroom" will help them easily identify where to go, especially in a hurry.

Easy and safe bathroom access

Another helpful tip is to make sure that the individual has easy access to the bathroom. This may involve removing obstacles or clutter in the home that could make it difficult for the individual to reach the bathroom quickly. You should also provide adequate lighting at night. In the bathroom, installing handrails or grab bars near the toilet can provide much-needed support and stability for individuals with Lewy Body Dementia who may have difficulty walking or maintaining balance. We installed a bathroom safety bar next to the toilet for Mom, and a toilet riser seat is also a good idea if it's hard to get up and down.

Clothing

It is also important to provide the individual with clothing that is easy to remove and wash in case of accidents. Clothing with elastic waistbands or Velcro closures can make it easier for the individual to change quickly if needed. It may also be helpful to keep a supply of extra underwear, pants, and incontinence products on hand in case of accidents if you're out.

Incontinence products

Incontinence underwear and briefs help individuals with Lewy Body Dementia keep their dignity and independence by preventing leaks and giving them a sense of security. Understandably, your LO might be hesitant to use incontinence products at first. If you encounter any resistance, try not to pressure them. They'll eventually come around in their own time.A few tips for incontinece products:• Avoid calling them "diapers." For them, incontinence is a delicate subject and could even be mortifying. Instead them "briefs," "underpants," "fancy pants," or any other term you like instead of the dreaded D-word. Maintaining their dignity is what matters most.• For a good, cost-efficient incontinence products, the Assurance brand from Walmart is great. If you're willing to spend more, check out the Because products which people seem to love.• Sign-up for auto-delivery (Amazon and Walmart) or subscription services where possible so you have one less thing you have to do. And keep an extra pack on hand in case of shipping delays or if you run out between shipments.

Protect your bed & furniture

Cleaning urine is exhausting, and quite frankly, as a full-time caregiver you don't have time for it. Save yourself a lot of hassle and get washable protection pads for your bed and furniture, and a good mattress protector. We use the 18" x 24" washable pad under Mom's bottom area at night in bed, and the 34" x 36" washable pad for chairs and furniture. To protect the bed, we bought this washable mattress protector to keep urine from penetrating the mattress.

Ask your doctor for medications

In some cases, medication may be necessary to help manage incontinence. Talk to a healthcare provider about potential treatment options for incontinence, as certain medications may be helpful in improving bladder control.

Hope these tips help!

♡S.S

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Songs to sing to your loved one with Lewy Body Dementia in the morning

There is something special about starting the day by singing to your loved one with Lewy Body Dementia. Despite the challenges they may face, music has a way of reaching past the barriers of memory loss and confusion, allowing for moments of a sweet connection.Singing to them not only provides emotional soothing but also triggers positive brain responses that can improve their mood and cognitive function. So, even if you're a not-so-great singer like me, don't hesitate to start each day on a good note by singing softly to your loved one living with Lewy Body Dementia.Here are my mom's favorite morning songs (and links to lyrics), which you are free to use.

"Three Little Birds"

"You Are My Sunshine"

"Somewhere Over the Rainbow"

"Good Morning"

"What a Wonderful World"

Enjoy this day with your loved one!

♡S.S

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Easy blender drink recipes for hydration

Dehydration is common with the later stages of Lewy Body Dementia patients due to forgetfulness, and in some cases, the ability to recognize when they’re thirsty.In Mom’s case, the taste of water no longer appealed to her, so I got out the blender and concocted a few easy drinks to help her stay hydrated during the day.Below are her favorite cocktails, and I hope they help your loved one stay hydrated, too.

Lemon, Ginger, & Honey:

2 cups (16oz) cold water
2 tablespoons of Lemon Juice (freshly squeezed or concentrated)
1 tablespoon Honey
1 tablespoon GingerPut all ingredients in a blender on high until ginger is finely chopped and fully blended. If the chunks are too big, strain before serving.

Apple Juice & Ginger:

2 cups (16oz) cold water
1 cup (8oz) of their favorite 100% apple juice (Honeycrisp Apple is Mom’s favorites)
1 tablespoon gingerPut all ingredients in a blender on high until ginger is finely chopped and fully blended. If ginger chunks are still too big, strain before serving.

Lime, Pineapple, & Ginger:

2 cups (16oz) cold water
1/2 cup (4oz) 100% Pineapple Juice
1 tablespoon Lime juice
1 tablespoon GingerPut all ingredients in a blender on high until ginger is finely chopped. If ginger chunks are still too big, strain before serving.

Passion Fruit Juice & Mint:

2 cups (16oz) cold water
1 cup (8oz) Ceres 100% Passion Fruit Juice or Passion Fruit Frozen chunks
4 whole mint leaves (no stems)
1 splash of lime juice (optional)Put all ingredients in a blender on high until mint is finely chopped and fully blended. If the mint or passion fruit chunks are still too big, strain before serving. Feel free to add more mint leaves to your liking or more Passion Fruit juice/chunks if you want it sweeter.

Cheers!

♡S.S

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High calorie, healthy smoothie recipes

The later stages Lewy Body Dementia can be incredibly challenging for both you and your loved one. One way to provide nourishment and hydration while also ensuring ease of consumption is by making smoothies, especially if your loved one doesn't like Boost or other artificial tasting protein shakes like mine.When chewing became too exhausting for my mom and she starting losing weight, I started making her these homemade smoothies every morning with no added preservatives, and sweetened only with a little honey.These smoothies have around 850+ calories per serving, and soon enough, Mom's weight began to climb back up.

Banana, Chocolate, & Peanut Butter Smoothie:

Ingredients:
1 cup unsweetened coconut, oat, or almond milk (any milk will do)
5-6 tablespoons all natural peanut butter
2 tablespoons honey (you can add more at the end if you want it sweeter)
1/2 cup uncooked rolled oats or instant oatmeal
1 teaspoon unsweetened cocoa powder
1 frozen banana (frozen makes it creamer)
6 ice cubes
Directions:
Blend coconut milk, peanut butter, and honey together (to save some time, double these ingredients and keep 1/2 in the fridge for the next day). Add in oatmeal and cocoa powder, and blend again until smooth. Finally, add in banana and ice cubes, and blend until smooth.FYI, if you're worried about oat chunks, strain the smoothie before serving.

Approximate calorie count:
873 calories

Peanut Butter & Jelly Smoothie:

Ingredients:
1 cup unsweetened coconut, oat, or almond milk (any milk will do)
5-6 tablespoons all natural peanut butter
2 tablespoons honey (add more at the end if you want it sweeter)
1/2 cup uncooked rolled oats or instant oatmeal
1/2 cup frozen blueberries
1/2 cup frozen whole strawberries
1 tablespoon (heaping) Smucker's Simply Fruit Seedless Red Raspberry Jam or 1/4 cup raspberries
3 ice cubesDirections:
Blend coconut milk, peanut butter, and honey together (to save some time, double these ingredients and keep 1/2 in the fridge for the next day).Add in oatmeal and frozen berries (or jam, if no raspberries), and blend until smooth. Finally, add ice cubes and blend again until smooth.FYI, if you're worried about seeds or oat chunks, strain the smoothie before serving.

Approximate calorie count:
923 calories

Apple & Peanut Butter Smoothie:

Ingredients:
1 cup unsweetened coconut, oat, or almond milk (any milk will do)
5-6 tablespoons all natural peanut butter
2 tablespoons honey (add more at the end if you want it sweeter)
2/3 cup uncooked rolled oats or instant oatmeal
1/2 teaspoon vanilla extract
1 teaspoon cinnamon
dash of nutmeg (optional)
1/2 cup apple sauce (I use unsweetened)
5 ice cubesDirections:
Blend coconut milk, peanut butter, and honey together (to save some time, double these ingredients and keep 1/2 in the fridge for the next day).Add in oatmeal, and blend again until smooth. Finally, add in the apple sauce and ice cubes, and blend until smooth.FYI, if you're worried about oat chunks, strain the smoothie before serving.

Approximate calorie count:
795 calories

Hope these recipes help!

♡S.S

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How to prevent constipation in Lewy Body Dementia care

Constipation is a common issue in individuals with Lewy Body Dementia, and it is important to take steps to prevent and manage it in order to maintain the overall health and comfort of your loved one. Constipation can also cause UTI's, which is something to keep in mind.Please note, these tips are for mild constipation. And, as always, consult with a doctor prior to using any product remedies mentioned below or if your loved one is experiencing severe or chronic constipation.

Healthy and balanced diet

A diet that is high in fiber, such as fruits, vegetables, whole grains, and legumes, can help to promote regular bowel movements and prevent constipation. This can be hard to achieve in the later stages of Lewy Body Dementia, so stick to foods that can easily be pureed or finely blended, like oatmeal.

Stay hydrated

It is also important to make sure that the individual is drinking an adequate amount of water and liquids each day, as dehydration can contribute to constipation. Adding soup to their diet is recommended, and foods like yogurt, fruit popsicles, jello, and ice cream are all also helpful foods for hydration in moderation.

Prune juice

Prune juice is a popular natural remedy for constipation, as it contains fiber and sorbitol which help promote bowel movements. By drinking prune juice daily, it can help soften stool and make it easier to pass, relieving constipation. Additionally, prune juice also contains antioxidants and vitamins that can improve overall digestive health.

Acacia Senegal Powder

Acacia Senegal Powder, derived from the sap of the Acacia Senegal tree, is known for its numerous health benefits, one of which includes its effectiveness in relieving constipation. This powder contains high amounts of soluble fiber, which helps to regulate bowel movements and improve overall digestive health. When taken regularly, Acacia Senegal Powder can soften stools, promote regularity, and reduce the discomfort associated with constipation. Additionally, this natural remedy is gentle on your LO's stomach and does not cause the harsh side effects often seen with traditional laxatives.

Heather's Tummy Care

Heather's Tummy Care for constipation is a game-changer when it comes to managing digestive issues. Designed with natural ingredients like organic ground flaxseed and acacia senegal fiber, this product helps promote healthy bowel movements, increases good gut flora, and relieves discomfort associated with constipation. It's gentle on the stomach, making it suitable for those with sensitive digestive systems. What sets Heather's Tummy Care apart is its focus on providing relief specifically for individuals dealing with IBS-related constipation, if your LO has a sensitive stomach.

Miralax

Miralax is a common over-the-counter medication used to treat constipation. You mix the powder with a glass of water or diluted juice. It works by drawing water into the colon, which softens the stool and makes it easier to pass. It's important to follow the instructions on the package and not take more than recommended.Some possible side effects include bloating, cramping, and gas. If constipation persists or worsens, it's best to consult a doctor for further advice.

Colace

Colace is a popular over-the-counter medication used to treat constipation. It's a stool softener AND a laxative, making it easier for your LO with Lewy body Dementia to expel poop in the later stages.It's important to follow the recommended dosage instructions and drink plenty of water while taking Colace to help it work effectively. And, again, please check with a healthcare professional before using.

Hope this is useful!

♡S.S

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